Men’s Health Month – Men With IC Deserve Our Support

One of the most powerful phone conversations I’ve had with an IC patient occurred about twelve years ago. The phone rang, I answered “IC Network. This is Jill. Can I help you?” All I heard on the other end was deep, heartbreaking sobs from someone so overcome with emotion that they were unable to speak. When the tears finally slowed, I was shocked at his first words. “I am the chief of one of the biggest trauma units in the country. I’ve had bladder pain for five years and not a single of one of my colleagues knows.” When I asked why, he said “Because the minute I tell them, I’ll lose all of my professional credibility.” He then whispered “I can’t do it anymore. I need their help and support.”

Shocked? You should be. His colleagues clearly didn’t believe that interstitial cystitis was a legitimate medical condition and were he to reveal his diagnosis, he feared that he, too, would be minimized and laughed at. But, it also points to a key issue that I want to focus on in this blog, that men are often denied the support and sympathy that they deserve.

I’ve had variations of this conversation with dozens of men over the years. A politician whose wife left him claiming that he couldn’t support her in the “high” style she wanted anymore. He cried “Who would want me now?” The active duty marine who feared the judgement of his colleagues. The man who was told by his doctor not to tell his family or friends that he suffered from pelvic pain, denying him their kindness and caring for years. The post 911 long haul airline pilot who wasn’t allowed to use a simple TravelJohn in the cockpit, despite the fact that he used one as a military pilot for years. The law enforcement officers who struggled to sit in their cars for longer periods of time.

One of the most egregious examples happened here in California. A college student with IC was trying to join fraternity. Unfortunately, he had a severe flare and ended up in the hospital. When he was unable to attend an event that weekend, he was unceremoniously kicked out. I personally knew the President of that fraternity and when I called and asked him about it, he said “He wasn’t good enough for us.” There was absolutely NO sympathy for another man in the hospital, struggling with a health condition. I was speechless and, honestly, disgusted.

Twenty years ago, IC was often mistakenly perceived as a women’s condition but, today, an estimated 1 to 4 million men struggle with the symptoms of IC according to a recent RAND prevalence study and these men deserve the same support and encouragement that women receive. Sadly, we haven’t made much progress. Earlier this year, an IC patient was told by his doctor to “Be a Man. Get back to work” despite agonizing pain.

On this, the last day of Men’s Health Month I demand that men with IC, prostatitis, PNE and chronic pelvic pain be treated with the compassion and kindness they deserve. No longer should they hide their pain. No longer should they suffer in silence. No longer should they worry that they will be perceived differently simply because they have a health condition.

After 20+ years working with IC patients, I believe that some men suffer more than women because they lack access to traditional support that women receive. Unlike women who will often discuss bodily functions and more with their friends, men rarely share their struggles with their friends and/or family. Many if not most are raised with the stereotype that they should solve their own problems. Still others are in careers (i.e. military, law enforcement, etc.) where showing weakness is discouraged.

And to the men who, like women, struggle with the self-esteem and the perception that they aren’t worthy to have a partner, I raise my hand and say “I not only respect what you are struggling with, but I’d love to meet you and I know lots of other women who would too.”

My ideal partner is a man who understands the challenges of IC, IBS and/or pelvic pain. Someone who can share the laughter of darting behind a bush should a quick pee be necessary. Someone who knows and understands the unpredictability of pelvic pain. Someone whose ideal vacation is an RV WITH a bathroom, TYVM. Someone who understands that intimacy doesn’t just occur during sex, but also in the small, daily moments of kindness and love that occur between lovers AND friends. I respect you more because you have struggled with a health condition like I have.

To the men reading this, please know that you are not alone. You have done nothing wrong. You are not a lesser person because you have IC or prostatitis or pelvic pain. Don’t let anyone tell you differently. Rather, you’re probably stronger and more determined today than at anytime in your life. Reach out to those that you trust. Ask for support from anyone in your life who can help, whether it be your siblings, sons, fathers or friends. If your IC is not improving, get back to the basics, review the IC treatment guidelines to see what other therapies are available and, of course, connect with your medical care provider. There is hope!

We’re here too if you’d like to talk! You can email me directly at: jill@ic-network.com or phone or patient education phone line at: 1-800-928-7496

Share This Story, Choose Your Platform!

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders.
As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life.
An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions.
With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.

Interstitial Cystitis Network

The ICN is a health education company dedicated to IC and chronic pelvic pain syndrome. Rated the top patient website dedicated to IC in peer reviewed studies by Harvard (2011) and the Univ. of London (2013), our goal is to empower, educate and encourage patients and providers!